The thoughts and observations of a retinal detachment patient

Monthly Archives: August 2015

It’s been a bad couple of weeks on the eye paranoia front. On a scale of one to ten (one = I don’t even think about my eye issues, and ten = ringing Moorfields and looking up train times whilst trying to breathe evenly in order to calm my pounding heart), I’ve probably been about a seven or eight this week. The fact that it was my first week back at work doing full-time hours probably hasn’t helped matters. Even on a good day, my eye aches and feels uncomfortable. After a full day at work on a computer (even with breaks and leaving on time), I’ve been coming home with my eyes feeling scratchy and sore, and so tired that I just want to close them and sleep. Just to add another dig in the ribs, my companion Insomnia has been rearing her ugly head again, too. I can’t bring myself to do what a friend was once advised for his insomnia – go downstairs and read the ‘phone book until he felt tired and then go back to bed and try and sleep. So instead I just shift from one side to the other (still not allowed to sleep on my back), and try to think of happy things… like the day when there will be a miraculous cure for retinal detachments without having to go through multiple surgeries and deal with sometimes crippling anxiety about repeat detachments.

The paranoia of the past couple of weeks started when i parked my car one sunny saturday morning and looked up at the blue sky, blinked, and saw a grey circle hovering threateningly in the sky. I blinked again and it was gone. Closed my eyes, opened them, and there it was again. Blinked, and it was gone. I must have sat there in the car for a good twenty minutes doing this like some kind of lunatic, before I noticed that there was a circular sign just in front of the car with a white border. I now *think* that what I was seeing was a kind of after image of this. I spent the rest of the day at various points stopping dead, staring up at blue sky and blinking, but I didn’t see it again.

I’d just about pacified myself over that, when the headaches started. Every few days. Not bad, but enough to feel pants and irritable. I started to think it must be my eye pressure going up, so I went off to the opticians to get the pressures checked. 18 in both eyes. Pheeeeew! That was okay then! So what was causing the headaches? Increased hours at work? Insomnia? Stress? All three most probably…

The headaches have improved over the past few days (I hope I don’t jinx it now), but my current paranoia involves looking right then left again, convinced I can see something pulling at the edge of my vision. I have had this before many times and asked about it at many of my appointments and am always told it’s okay. I even went and got my little eye book out the other day to check what’s been said about it in the past in the hopes that it would make me feel a bit better. I’ve never received a satisfactory answer about what exactly it is, but have been told ‘it could be the oil’. It seems I’m often told ‘it could be the oil’ when they’re not sure what it is. A bit like going to the GP and being told that you have ‘a virus’. But until I can ask about it again, it’s worrying me. Plus I seem to be getting some more flickering in a different area of my eye. I’m hoping this isn’t more of the retina starting to detach, as is the case with the almost psychadelic flickering which I often get at the bottom of my eye. I keep obsessively checking my visual field against the various markers in my house, and at the moment, thankfully, it seems to be unchanged. But I still worry, because I don’t know why it’s flickering. My next appointment isn’t until 28 September, which seems an age away at the moment. I fear I may be carted off in a straitjacket before that time.

I’ve never eaten so much spinach, kale, yellow peppers, baby sweetcorn, raw carrots, beetroot, kiwifruit, and blackcurrants as I have in the past few months. I’ve always eaten fairly healthily (apart from my habit of delving into the biscuit tin, which we’ll gloss over fairly rapidly), but since the trouble with my eyes I’ve become ever so slightly obsessed with eating foods which are good for eye health. This even reached the extent of me refusing fish and chips when my mum suggested it as a treat one day while I was staying with her. ‘I’d really like fish and chips, but there’s no good eye food in it’, I explained, sighing regretfully. Actually I suppose this isn’t technically true, as oily fish is good for eyes, but I can’t say I like the sound of battered salmon. My mum and sister are now well accustomed to my answering the question, ‘What do you fancy for dinner?’ with ‘Good eye food, please!’ and whenever I eat out, I scan the menu and quickly detect the option which is most eye friendly. In fact, I’m thinking of suggesting that restaurants adopt a little symbol of an eye on the menu to denote the good eye food option, much as they do for the vegetarian and gluten-free dishes.

My obsession with ‘good eye food’ came about because I wanted to do actually do something to try and help myself, so I asked my sister if there was any link between nutrition and eye health. I should explain here that my sister is a qualified nutritionist. It remains a standing joke in our family that she found herself studying for a PhD by accident, and it took a family friend who was then a lecturer at De Montfort University to point out, ‘It sounds very much as if you’re actually doing a PhD’ before it transpired that this was indeed the case. However, despite the fact that she’s a regular and enthusiastic occupier of La La Land, my sister really does know what she’s talking about where nutrition is concerned. So, here’s a brief run-down of good eye food, according to Dr Lu…

First of all, it’s important to eat a good balanced diet. It’s no use eating *only* good eye food, because otherwise we could miss out on other nutrients. Plus, certain nutrients are better absorbed when eaten with certain foods, so for example eating a little good fat with your eye friendly leafy greens etc will help your body absorb the lutein and zeanthin in the vegetables. For this reason, it’s also best to aim to get all of our nutrients via a balanced diet, rather than relying on supplements.

The following are good for eye health: vitamins A, C, and E, omega 3, zinc, and the carotenoids lutein and zeaxanthin. Vitamins A, C, and E are antioxidants, which help maintain healthy cells and tissue in the eyes, and they also ‘mop up’ baddies in the whole body. They can be found in so many fresh fruit and vegetables, that it seems a bit daft making a list of them all. Omega 3 provides structural cell support and is good for general eye health. Oily fish (i.e. salmon, trout, fresh tuna, mackrel, sardines), nuts and seeds are all excellent sources of omega 3. Studies have found that zinc can help protect eye health, which is thought to be due to the high concentration of zinc in parts of the eyes, particularly the retina. Sources of zinc include meat, shellfish, dairy foods and wholegrains. Lutein and zeaxanthin can help protect the macular from sun damage, and there’s also a considerable amount of research which suggests that a diet high in these carotenoids may decrease the risk of age-related macular degeneration or slow down progression. Lutein and zeaxanthin can be found in the following foods: green leafy vegetables such as kale and spinach, red, yellow, and orange peppers, sweetcorn and corn products, lettuce, broccoli, oranges, eggs, leeks, peas, kiwifruit, courgettes, mangoes, and oranges. .Another nutritional trip worth mentioning is that I’ve been advised to increase my consumption of protein after surgery, as protein helps cells to repair themselves.

So basically, advice from Dr Lu is rather than get too bogged down with how much vitamin A, C, E, lutein etc is in particular foods, it’s best to prepare your meals from scratch so that you know what’s in them and to optimise the nutrient content. It’s also important to include a variety of foods from each food group in your diet: Fruit and veg… eat a rainbow; Carbohydrates… eat wholemeal and don’t forget potatoes; Protein… eat natural and varied (and don’t forget your pulses and nuts); and Dairy… not just milk but yoghurt, cheese, creme fraiche. This all applies to general good health, not just eye health. Finally, if you’re going through the hideousness of eye surgery, a certain amount of chocolate and sweets is a necessity!

For any of my eye buddies reading this, you’re probably already aware that there is a certain amount of dodgy stuff written about nutrition and eye health out there, as well as sensible information based on sound research. Personally, I reckon it’s always a good plan to cross-reference the information with reliable sources, and check with a properly qualified professional if necessary before making any drastic dietary changes. Right, I’m feeling a bit peckish after all that, so now I’m off to tuck into a tasty frittata with peppers, sweetcorn, tomatoes, spinach, courgettes, and peas; washed down with a glass of grapefruit juice, and then a kiwifruit and an orange for dessert. If I’m still hungry later on, I’ll nibble on a handful of nuts, seeds, and dried apricots. 😉

Note: This blog post was written in collaboration with my sister and nutritional adviser, Dr Lu (PhD).

I CONSIDERED WRITING THIS ENTIRE POST IN ANGRY, SHOUTY CAPITALS, POSSIBLY MAKING THEM LARGER AND THEREFORE MORE ANGRY AND SHOUTY IN EACH SUBSEQUENT PARAGRAPH but according to the RNIB, text in normal case (i.e. as I’m now typing it) is easier to read for people with visual impairments and I can actually verify this. You may remember from a previous blog post (see https://rdramblings.wordpress.com/2015/07/16/the-kindness-of-strangers/) that my no-nonsense colleague commented that she thought my posts were a bit angry, and I darkly warned that I’d be returning to anger issues at a later date. Well, after my latest appointment, in which I was told that my ‘mischevous’ [pause, while I snort derisively at the inapproriateness of that particular adjective in this case] retina is starting to detach a little above the 360 degree laser line (see: https://rdramblings.wordpress.com/2015/07/30/a-grand-day-out-at-moorfields-eye-hospital/), it seems as good as time as any to discuss anger issues. And let me assure you that JUST BECAUSE I’M NOT WRITING LIKE THIS, it doesn’t mean I’m not ANGRY! [Pauses in order to growl menacingly].

Now quite frankly, I think it’s pretty normal to get angry about all this, and I can’t really believe that anyone who’s experienced a retinal detachment would not get angry about it occasionally. From a wider perspective, it turns your life upside down not only during the horrendous post-surgery posturing period but also afterwards when you’re desperately trying to get back to some kind of normality. Repeat re-detachments bring increasing fears of further sight loss and the implications of that in terms of ‘will I still be able to do my job?’, ‘will I still be able to drive’, ‘will I still be able to make out people’s expressions when they’re talking to me?’, and even, ‘will I be able to look in the mirror after a meal and check I don’t have spinach stuck in my teeth?’. Okay, so that’s fear rather than anger. But all the fear MAKES ME ANGRY, because I DON’T WANT IT TO BE LIKE THIS! I don’t want to be afraid to open my eyes in the morning incase I can’t see. I don’t want to jump like an idiot when a fly zips past me like a little black dot, clearly pretending to be a floater just to freak me out, or when I see something catching the light and causing a flash in my peripheral vision. I don’t want to be constantly checking my visual field and feeling that horrible sick and panicky feeling whenever I notice something which seems to be different. I don’t want severely limited vision in my right eye for the rest of my life, and to have to put up with the constant aching and discomfort in it. I DON’T WANT ANY OF THE RUDDY STUFF – I JUST WANT HEALTHY EYES THAT WORK PROPERLY! I know I said I wouldn’t keep talking in capitals, but it’s quite satisfying to be doing the shouty thing.

After my fourth lot of surgery, when a small detachment was found again, I was so frustrated and angry that I spent a fair amount of time during my posturing breaks just uttering expletives in between cramming in all the other things that have to be done during that time such as going to the loo, eating, putting eye drops in, and stretching to relieve painful muscles. The fact that my mum didn’t even chastise me for my bad language is a pretty significant indicator of just how grim things were at that time. My sister wasn’t phased in the least and joined in my swearing with gusto. We should really have procured a swear box and donated the proceeds to research into retinal detachments. There would probably be a cure by now if we’d done that.

Sometimes, I get so angry that it makes me want to hurl something across the room, preferably through a large glass window for added satisfaction. After a particularly frustrating day at work recently, I informed my colleague that I was going home to snap all my pencils in half. She clearly didn’t believe me, inquiring whether I have a lot of pencils at home. When I replied, ‘Oh yes, I’ve got loads because I sketch. I’ll start with the HB and 4B ones because I don’t use those as much’, she looked slightly alarmed. In the past couple of days I’ve resorted to releasing some of the frustration by growling at my retina. This is because I suddenly remembered what we used to do with my Grandad in the last year or so of his life when he was getting very frustrated with all his aches and pains. If there wasn’t anything practical which could be done to ease them, I’d occasionally suggest, ‘Let’s growl at them, Grandad!’, and go on to demonstrate, ‘Grrrrrrrr!’ He’d stare at me in uncertainty for a few minutes before screwing up his face and joining in: ‘Grrrrrrr!’ he would grow, and ‘Grrrrrrr!’, I would growl back until we were nose to nose and after a little more of this, he’d usually start laughing. I haven’t reached the laughing part yet, but I find it does help to have a good growl now and then.

Occasionally, I get the moments of anger mixed with self-pity when I think, ‘WHY DID THIS HAVE TO HAPPEN TO ME?’ (Shouty capitals are definitely called for when I get into that state of mind.) Of course, being a generally logical person, I then remind myself that I’m actually pretty sure of why this happened to me. My Gran had retinal problems and my cousin had a bad retinal tear when he was in his twenties, so I’m fairly certain that it’s hereditary in my case as my prescription has never fallen into the -6 ‘danger zone’ for a detachment. Of course, this doesn’t help matters in the moments when I wail, ‘BUT WHY COULDN’T IT ****** WELL HAVE BEEN FIXED IN THE FIRST LOT OF SURGERY, LIKE 85-90% OF CASES?!’ Well, I suppose I know the answer to that as well really, as my surgeon informed me, ‘You have a very unusual eye’. Great. I somehow managed to resist the temptation to stamp my foot and demand a normal, bog-standard, ordinary one.

I think it’s worth pointing out to my no-nonsense colleague that I don’t spend ALL my time in a state of anger. I remember reading an article quite a while ago which basically argued that certain human emotions are unsustainable for long periods of time and even though at times it feels as if we’ll experience grief / anger / frustration / upset for weeks and months on end, actually the feeling will pass. It may come and go, but we don’t generally feel that high level of emotion continually over a sustained period of time. The article also advised that the healthiest approach is to just allow the emotion to come and go, instead of trying to quash it. So when I get particularly angry or upset about the whole thing, I try to remind myself of this before I start snapping my pencils in half.